about us€¦ · and ethical perspectives” dr guang xing associate professor, centre of buddhist...
TRANSCRIPT
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ABOUT US
Established in 2012, The Centre for Medical Ethics and Law (CMEL) is a joint effort
of two leading faculties, the Li Ka Shing Faculty of Medicine and the Faculty of Law
at the University of Hong Kong. Our visions are: to become a focal point for
international research excellence in the area of medical ethics and law; to co-
ordinate and provide teaching and training to university students and
professionals; and to promote and disseminate our expertise to the benefit of the
public.
The Centre’s objectives are respectively in research, teaching, knowledge
exchange and training. Research: To produce and disseminate high-quality and
cutting edge research in medical ethics and law. Teaching: To contribute to the
interdisciplinary teaching and learning at the University by providing a forum for
the discourse of medical ethics and law. Knowledge Exchange: To provide expert
training and continuing education to the professionals of both disciplines and to
help setting the ethical standard on related issues. Training: To promote and
disseminate knowledge of medical ethics and law to the public at large and
enhance the community’s awareness in this regard. Aligning with the University’s
vision of ‘Internationalisation, Innovation and Interdisciplinarity’, the Centre
collaborates with institutions, professional bodies and scholars in Hong Kong and
internationally in order to pursue these objectives.
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THEMES
How does the law govern the ownership of human bodies? And of its parts, and
things derived from it? What are the fundamental legal principles governing claims
to ownership, possession and other rights in the human body? What are the ethical,
legal, and social issues that arise when organs or tissue are used in human organ
transplantation and other applications? This two-day conference seeks to explore
these fundamental questions from ethical, legal, medical, religious and social
perspectives. The conference will survey the current state of the common law
governing property and other interests and rights in the human body, in organs
(especially in relation to transplants), in human tissue and other human samples,
and in ‘waste’ tissue and products. From these basic inquiries we move on to a
consideration of remoter interests ultimately derived from the human body. Under
the rubric of these remoter interests, the control, custody, management,
‘ownership’ and the sharing and dissemination (for research or for clinical purposes
of medical and genetic information derived from the human body can be then
explored. The conference will end with a consideration of (again under the
general scope of remoter interests) intellectual property rights and claims,
particularly in relation likely future developments in competing major jurisdictions.
The objectives of the conference is to establish what the underlying fundamental
legal principles are; how these principles affect current and the future
development of specific rules in remoter interests; to identify gaps and
inconsistencies in current law and practice; to discuss the current tensions between
the imperatives of clinical and research use for tissue and information and that of
the privacy of the individual, and to discuss and suggest how these tensions may
be best bridged to mutual benefit; and finally to consider the issue of trust between
donors and the recipients or custodians of organs, tissue or the medical information
derived from such tissue.
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SPEAKERS AND PANELISTS
Dr Philip Beh Department of Pathology, The University of Hong Kong
Professor See-Ching Chan Hong Kong Sanatorium and Hospital
Dr Clement Chen The University of Hong Kong
Professor King-Lau Chow The Hong Kong University of Science & Technology
Professor Leonardo de Castro University of the Philippines
Dr Imogen Goold Oxford University
Dr Guang Xing Centre for Buddhist Studies, The University of Hong Kong
Ms Alison Hall PHG Foundation, Cambridge
Dr Calvin Ho National University of Singapore
Dr Chih-hsing Ho Academia Sinica, Taiwan
Mr Terry Kaan Faculty of Law, The University of Hong Kong
Professor Bartha Maria Knoppers Centre of Genomics & Policy, McGill University
Mr Alex Chi-Yau Lam Hong Kong Patients’ Voices
Mr Colm McGrath Faculty of Law, University Of Cambridge
Professor Tohru Masui Center for Genetics, Keio University School of Medicine
Professor Peter Skegg Faculty of Law, University of Otago
Dr Jeffrey Skopek Faculty of Law, University of Cambridge
Dato’ Dr Zahari Noor Penang Hospital, Malaysia
Dr Ron Zimmern PHG Foundation, Cambridge
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Programme
Thursday 6 April 2017
PART I: PROPERTY IN THE BODY
This session will be dedicated to an exploration of the current state of the English common
law and the fundamental legal principles governing claims to ownership, possession and
other rights in the human body, retained organs and physical tissue samples are explored,
as well as the experience of legislative and other regulatory responses in some common law
jurisdictions. Property rights in relation to ‘waste’ tissue or abandoned bodily products, as
well as research access to ‘legacy’ tissue collections collected for diagnostic purposes will
also be discussed.
9:00 - 9:30am Registration
9:30 - 9:40am Introduction
Dr Ron Zimmern
Chairman, PHG Foundation, Cambridge; Honorary Professor of
Public Health, The University of Hong Kong
SUB-THEMES 1: The general approach of the law to claims to property rights in the human body, and
legislative and other regulatory responses
9:40 - 10:10am Keynote Presentation: “Human Bodies and Body Parts: Anyone’s
property?; If so, whose? Traditional common law approaches”
Professor Peter Skegg
Emeritus Professor, Faculty of Law, University of Otago 10:10 - 10:20am Keynote Q&A
10:20 - 10:40am Presentation 2: “Regulatory Approaches and the Experience of
the UK”
Ms Alison Hall
Head of Humanities, PHG Foundation, Cambridge
10:40 - 11:00am Morning Coffee Break
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11:00 - 11:20am Presentation 3: “Japanese Discussion on Status of Human Body
Parts”
Professor Tohru Masui
Center for Genetics, Keio University School of Medicine
11:20 - 11:40am Presentation 4: “Gifts or Commodities? Human Tissue Ownership
and Associated Data Use in Biomedical Research- The Case of
Taiwan” Dr Chih-hsing Ho
Assistant Professor/Assistant Research Fellow , Academia Sinica,
Taiwan
11:40am - 12:40pm Roundtable Discussion
12:40 - 2:00pm Lunch
SUB-THEMES 2: ‘Waste’ tissue and other ‘abandoned’ bodily products, research access to ‘legacy’
diagnostic tissue collections, perspectives from other jurisdictions
2:00 - 2:20pm Presentation 1: “A Call for a More Holistic Approach to
Governance of Biobanks – Experiences from Singapore”
Dr Calvin Ho
Assistant Professor, Centre for Biomedical Ethics, National
University of Singapore
2:20 - 2:40pm Presentation 2: “Human Tissue and the Doctrine of
Abandonment”
Dr Imogen Goold
Associate Professor in Law, Faculty of Law, Oxford University
2:40 - 3:00pm Presentation 3: “Compensation and Human Tissue as Products”
Mr Colm McGrath
WYNG, Research Fellow in Medical Law & Ethics,
Trinity Hall, University of Cambridge
3:00 - 3:30pm Afternoon Coffee Break
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3:30 - 3:50pm Presentation 4: “Living Donor Organ Transplantation in Regions
with Limited Deceased Organ Donors”
Professor See-Ching Chan
Honorary Consultant in General Surgery, The Hong Kong
Sanatorium and Hospital; Honorary Clinical Professor, The
University of Hong Kong
3:50 - 4:10pm Presentation 5: “Presumed Altruism”
Mr Terry Kaan
Associate Professor in Law, Faculty of Law; Co-Director, Centre
for Medical Ethics & Law, The University of Hong Kong
4:10 - 5:10pm Roundtable Discussion
6:30pm Conference Dinner
Speakers and Invited Guests
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Friday 7 April 2017
PART II: THE HUMAN BODY APPLIED
The general theme for the second day of the conference is an examination of the ethical,
legal and social impact of applications of material taken from the human body, particularly
in the context of human organ transplantation and the responses arising therefrom. Religious
and social perspectives are considered. The balance between the public interest in
promoting ethical access to tissue collections and medical information derived therefrom
are discussed, as are regulatory regimes for the protection of the privacy of donors. The
likely impact of current developments in claims to intellectual property derived from the
human body is also considered.
SUB-THEMES 1: Human organ transplantation and the human context
9:30 - 10:00am Keynote Presentation: “Beyond the Individual: Familial and
Solidarity Claims?”
Professor Bartha Maria Knoppers
Canada Research Chair in Law and Medicine;
Director, Center of Genomics and Policy, McGill University 10:00 - 10:10am Keynote Q&A
10:10 - 10:30am Presentation 2: “Naïve Conceptions of the Human Body”
Professor Leonardo de Castro
Department of Philosophy, University of the Philippines
10:30 - 10:50am Presentation 3: “Buddhist Attitude to Human Bodies from Moral
and Ethical Perspectives”
Dr Guang Xing
Associate Professor, Centre of Buddhist Studies,
The University of Hong Kong
10:50 - 11:20am Morning Coffee Break
11:20 - 11:40am Presentation 4: “Tissue Organ Donation for Transplantation,
Medical Education and Research- A Malaysian and Islamic
Perspectives”
Dato’ Dr Zahari Noor
Head and Consultant,
Department of Forensic Medicine, Penang Hospital, Malaysia
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11:40am - 12:40pm Roundtable Discussion
12:40 - 2:00pm Lunch
SUB-THEMES 2: Ethical access to tissue collections and medical information, tissue and data sharing for
research, regulatory regimes for the protection of the privacy of donors, and intellectual
property rights derived from the body
2:00 - 2:20pm Presentation 1: “Should Anonymization Extinguish Our Rights?”
Dr Jeffrey Skopek Lecturer in Medical Law, Ethics, and Policy; Deputy Director,
Centre for Law, Medicine, and Life Sciences, University of
Cambridge
2:20 - 2:40pm Presentation 2: “Ownership of Oneself – Our Identity”
Professor King-Lau Chow
Professor of Life Science and Biomedical Engineering, The
Hong Kong University of Science and Technology
2:40 - 3:00pm Presentation 3: “Body Rights – Scienti or Volenti? Patients’
Perspective”
Mr Alex Chi-Yau Lam
Solicitor; Chairman, Hong Kong Patients’ Voices
3:00 - 3:20pm Afternoon Coffee Break
3:20 - 4:20pm Roundtable Discussion
4:20 - 4:40pm Conference Summary
End of Conference
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ABSTRACTS
Thursday 6 April 2017
PART I: PROPERTY IN THE BODY
SUB-THEMES 1: The general approach of the law to claims to property rights in the
human body, and legislative and other regulatory responses
KEYNOTE PRESENTATION HUMAN BODIES AND BODY PARTS: ANYONE’S PROPERTY?; IF SO, WHOSE?
TRADITIONAL COMMON LAW APPROACHES
Professor Peter Skegg, Emeritus Professor, Faculty of Law, University of Otago
At common law, it has long been accepted that no-one owns dead human bodies: this is a
consequence of the so-called “no property” rule. In terms of judicial authority, this rule is better
established nowadays than ever before in its long history. However, it is subject to a very important
exception, whereby parts removed from dead bodies (and, exceptionally, whole dead bodies)
can sometimes become the subject of property and hence be owned. The common law rule
whereby living human beings cannot be owned has a wholly different origin from that relating to
corpses and is not so ancient. It is now a fundamental principle of the common law, but it does not
follow that parts removed from living bodies cannot be the subject of property. Unlike whole living
human beings, severed parts (and body products) can be owned. However, it is often uncertain
who (if anyone) is the owner.
PRESENTATION 2 REGULATORY APPROACHES AND THE EXPERIENCE OF THE UK
Ms Alison Hall, Head of Humanities, PHG Foundation, Cambridge
The Human Tissue Act was enacted in 2004 in response to a series of scandals involving the retention
and misuse of human tissues and organs. As well as providing a statutory framework for tissue
storage and use in England, Wales and Northern Ireland, the Act symbolised a cultural shift from
customary practice that was paternalistic in nature and ‘failed to respect the interests of families’
to a regime where individual choice underpinned by consent prevailed. Arguably there are
sections of the Act where it has been difficult to reconcile the symbolism of individual ‘choice’ and
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consent with different types of public interest, including the wider needs of families, communities
and health systems. As a result, various compromise positions were adopted during the passage of
the Bill that continue to be points of friction, over a decade after implementation. This presentation
will evaluate the significance of these issues, suggest some further challenges to this statutory
framework which have arisen over the last ten years and reflect on the impact of this legislation
and wider consequences for policy development.
PRESENTATION 3 JAPANESE DISCUSSION ON STATUS OF HUMAN BODY PARTS
Professor Tohru Masui, Center for Genetics, Keio University School of Medicine
We naturally think “my body is mine” and expect the extension of this concept. However the
situation gets complicated with lawsuits ending with different principles. I was very uneasy with the
conclusion of the Catalona case in US. However the case somehow may reflect Japanese practice
in the area. We do not have this kind of lawsuit in Japan, but now the responsibility of donated
tissues rest on the hospital or the research institution, in where researchers obtain and store the
human body parts. We used to feel and, in practice, behave that the researchers who asked and
collected the resources have “ownership” or responsibility on collected items. Now Japanese
policy seems to follow US policy on the area.
In my talk I would like to summarize our history of discussion on the use of human body parts in
medical research and briefly mention on the issue of transplantation in Japan.
What’s mine is my own? Own possession
What’s mine is ours? Sharing
What’s mine is yours? Start leaving me
What’s mine is theirs? Not mine at all. They have control on it.
PRESENTATION 4 GIFTS TO COMMODITIES? HUMAN TISSUE OWNERSHIP AND ASSOCIATED
DATA USE IN BIOMEDICAL RESEARCH – THE CASE OF TAIWAN
Dr Chih-hsing Ho, Assistant Professor/Assistant Research Fellow, Academia Sinica,
Taiwan
Human tissue and health information have increasingly become useful resources of biovalue along
with the rapid development of biomedical innovations. It has been argued that the presumed gift
model implied from using consent to replace property renders patients and research subjects
powerless in a capitalist market system in which biotechnological commodification has turned
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human tissue from waste to resources. A question worth further discussion is whether recognising
property rights in human tissue and genetic information derived from it would be more appropriate
to protect the sources of the tissue in terms of retaining control over its use once the tissue has been
removed from the body. In addition, when tissue samples are processed and transformed from gifts
to commodities, whether the sources are entitled to claim for any share of benefits on the ground
that they are the “owners” of their tissues? This presentation will touch upon these essential issues
and studies the case of Taiwan in order to examine whether the existing legal and regulatory
framework is sufficient to protect research subjects, and if the recognition of benefit sharing may
be an alternative supplement to bioethical practices in the Taiwanese context.
SUB-THEMES 2: Waste’ tissue and other ‘abandoned’ bodily products, research
access to ‘legacy’ diagnostic tissue collections, perspectives from other
jurisdictions
PRESENTATION 1 A CALL FOR A MORE HOLISTIC APPROACH TO GOVERNANCE OF
BIOBANKS – EXPERIENCES FROM SINGAPORE
Dr Calvin Ho, Assistant Professor, Centre for Biomedical Ethics, National University
of Singapore
Governance of biobanking varies significantly among different jurisdictions. While the requirement
of a donor’s informed consent for the use of her or his biological materials for research is the
cornerstone of most – if not all – ethical or regulatory regimes, the approach to consent-taking can
vary from project-specific detailed consent to general (or broad) consent. There is to-date no
consensus as to which approach to consent-taking will best comply with the preferences of donors,
and is also ethically defensible. This presentation will provide an overview of the different models of
consent and will evaluate the approach that is adopted in Singapore, with focus on the recently
established legislative regime that governs all human biomedical research conducted in the
country. It will be further argued in the presentation that informed consent is a pragmatic and
necessary, but inadequate, expression of respect for persons. Instead, a more holistic approach to
the ethical governance of biobanking will require more comprehensive and equitable
engagements with all stakeholders, particularly on the allocation of biological materials. One such
approach will be considered in the presentation.
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PRESENTATION 2 HUMAN TISSUE AND THE DOCTRINE OF ABANDONMENT
Dr Imogen Goold, Associate Professor of Law, Faculty of Law, Oxford University
In the debate over how we should regulate human biomaterials, and specifically whether we ought
to deal with them as legal property, reference is often made to the notion of ‘abandonment’, both
in the legal and the lay sense (and sometimes, unhelpfully, interchangeably). Despite these
references to the concept of abandonment, there has to date been little fine-grained analysis of
how the legal concept of abandonment, as part of the law of property would actually operate if
applied to human tissue. This paper presents such an analysis. It begins by providing an account of
the doctrine of abandonment in English law, as well as some comparison with the position in other
jurisdictions. A focal issue in this account is whether it can be said that such a doctrine operates in
these jurisdictions at all. The paper then outlines and critically appraises some of the ways in which
this concept has been deployed in the body-as-property debate. It argues that this deployment is
often marked by shifts between the legal and law senses of abandonment and a lack of grounding
in the relevant case law. Both are considered serious problems given the vital role abandonment
plays in some conceptions of how the law of property might apply to human biomaterials. Given
this, the paper then turns to an analysis of how the doctrine of abandonment might operate in
relation to discarded human biomaterials, if such a doctrine indeed exists. In doing so, it explores
whether deeming biomaterials property will necessarily render ‘innocent’ or ‘legitimate’ uses of
biomaterials legally problematic, and why an accurate application of the concept of
abandonment in the body-as- property debate is so important, with a particular focus on its
implications for dealings with so-called ‘waste’ tissue, and the acquisition of biomaterials for
research.
PRESENTATION 3 COMPENSATION AND HUMAN TISSUE AS PRODUCTS
Mr Colm McGrath, WYNG, Research Fellow in Medical Law & Ethics, Trinity Hall,
University of Cambridge
It is trite law that an aggrieved patient may recover for negligently performed medical intervention
where a practitioner has failed to demonstrate the required skill. Equally, where that intervention
involves the use of ‘products’, an action may lie where the harm to the patient flows from a product
being defective. That second form of action, which has been taken to encompass some forms of
human tissue as ‘products’ for the relevant purposes was, in principle, easier for the patient as it was
based on a no-fault, statutory regime (captured in the Consumer Protection Act 1987) rather than
the tort of negligence. Recent changes in the UK law concerning the latter have rendered this
division suspect and it may now be the case that whatever benefit was to be had from the statutory
action is limited where the action concerns the use of injurious human tissue or organs. This paper
explores these emerging problems and questions whether a strict division between patients in these
various contexts is sustainable.
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PRESENTATION 4 LIVING DONOR ORGAN TRANSPLANTATION IN REGIONS WITH LIMITED
DECEASED ORGAN DONORS
Professor See-Ching Chan, Honorary Consultant in General Surgery, The Hong
Kong Sanatorium and Hospital; Honorary Clinical Professor, The University of Hong
Kong
There is a global shortage of deceased donor organs for transplantation. The shortage is particularly
devastating in the East. The only role of living donor organ transplantation is to provide an
alternative remedy, often lifesaving, for deceased donor organ transplantation. This is particularly
applicable when there is a limited supply of deceased donor organs, or such organs are not timely.
Living donor organ donation is not without risk given the magnitude of the donor surgical operations.
In order to justify the inevitable donor risks, living donor organ transplantation mandates a
predictably high recipient benefit in term of survival and quality of life, and an acceptably low
donor risk. The double equipoise imposes the contextual features of this already technically
complex treatment modality. While we endeavor to maximize the donor recipient risk benefit ratio,
the lowest recipient benefit and highest donor risk are yet to be defined. Whether these should be
different in regions with very limited supply of deceased donor organs for transplantation are also
debatable. The field strength of living donor organ transplantation could only be determined by
applying the basic bioethical principles to it and in the face of the best contemporary standard of
health care.
PRESENTATION 5
PRESUMED ALTRUISM
Mr Terry Kaan, Associate Professor in Law, Faculty of Law; Co-Director, Centre for
Medical Ethics & Law, The University of Hong Kong
This paper explores the related themes of presumed consent for cadaveric donations and the
difficulties of judging altruism in living donor organ transplants. The experience of Singapore with
presumed consent legislation for cadaveric transplants is explored: has 3 decades of such a
legislative regime resulted in better donation rates? Does a presumed consent legislative regime
have a negative effect on other kinds of organ donations, particularly those falling outside of the
ambit of the presumed consent legislation? Given the failure of the framework of presumed consent
legislation to meet the demand for organs, attention has turned once again to living donor organ
transplants (LDOT) for organs such as kidneys and livers. The most intractable problem in LDOT is
not a medical one: it is the ethical and social problem of assessing whether an organ offered for
LDOT has been offered out of pure altruism, untainted by any monetary motivation, or by social or
family pressure or other forms of undue influence. We examine the legislative safeguards
implemented in Singapore and in Hong Kong to ensure altruism, and discuss whether in fact these
work. On a related point: in the context of Asian societies and families (such as those in Singapore
and in Hong Kong), does the law sufficiently factor in social dynamics within the family in assessing
whether there has been undue influence in LDOT donations?
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Friday 7 April 2017
PART II: THE HUMAN BODY APPLIED
SUB-THEMES 1: Human organ transplantation and the human context
KEYNOTE PRESENTATION BEYOND THE INDIVIDUAL: FAMILIAL AND SOLIDARITY CLAIMS?
Professor Bartha Maria Knoppers, Canada Research Chair in Law and Medicine;
Director, Center of Genomics and Policy, McGill University
Respect for the autonomy of individual patients and research participants has long been a central
focus of medical ethics discourse. Increasingly these conversations are expanding to incorporate
familial and public health rights by way of the values of mutuality and solidarity. These values
refocus the debate on the ethical uses of human tissue and of personal health data to include a
more nuanced understanding of the individual as belonging to a series of collectives: the family, a
biological and social unit to which we can attach unique ethical and legal rights, and the greater
community, within a health care system needing big data for both research and targeted
prevention and treatment.
This talk will begin with the tension between organ donor consent and family override in the context
of postmortem organ donation, and then further explore conflicting values among individual,
familial, and solidarity claims pertaining to access to biological samples and personal health data.
We will then examine: the rights (or not) of biological family members to receive or be notified of
pertinent medical information; the concept of an ethical or legal duty to warn family members of
such information; and the establishment and use of public, human genetic reference databases
whose research contributes to the public good.
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PRESENTATION 2 NAÏVE CONCEPTIONS OF THE HUMAN BODY
Professor Leonardo de Castro, Department of Philosophy, University of the
Philippines
This presentation examines conceptions (or misconceptions) of the human body or of human body
parts expressed in concrete situations by laypersons as they talk about organ or tissue transplants
or donation. Being legally naïve, these conceptions often are brushed aside in academic or formal
discourse about various aspects of organ transplantation. Related to these naïve conceptions of
the human body are flexible conceptions of family and interdependence that challenge legal
definitions in the context of organ donation and transplantation. Taken together, these conceptions
offer important insights into people’s views that need to be reflected in more nuanced legislation
about permissible or impermissible organ transplants, whether from living or cadaver sources.
PRESENTATION 3 BUDDHIST ATTITUDE TO HUMAN BODIES FROM MORAL AND ETHICAL
PERSPECTIVES
Dr Guang Xing, Associate Professor, Centre of Buddhist Studies, The University of
Hong Kong
Unlike most of the world religions, the human body is not considered either as something sacred or
something polluting and disgusting, but only as an instrument for some higher purposes such as
achieving awakening in Buddhism. However, this does not mean that Buddhists harm their bodies
or support suicide. On the contrary, Buddhists also protect their bodies and keep it in good condition
because without which one will not be able to attain the higher goal in life.
According to the Buddhist philosophy, the human physical body is made up of four great elements:
solidity, fluidity, heat and motion. Once when a person dies, the human body dissolves in to its
elements again: solidity returns to the earth, fluidity to water, heat to fire and motion to wind. So the
dead body is considered just like any other thing without consciousness. Thus, Buddhism support
organ donation and it is considered as a bodhisattva act of compassion. However, the dead should
be treated with great honour and respect when operation takes place for organ donation.
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PRESENTATION 4 TISSUE ORGAN DONATION FOR TRANSPLANTATION, MEDICAL EDUCATION
AND RESEARCH – A MALAYSIAN AND ISLAMIC PERSPECTIVES
Dato’ Dr Zahari Noor, Head and Consultant, Department of Forensic Medicine,
Penang Hospital, Malaysia
Cadaveric Tissue Organ donation for the purpose of transplantation in Malaysia is an opt in system
where consent from the next of kin is required despite the deceased was a donor pledger. The
number of tissue organ donation is still small particularly among the Muslim population. Efforts have
been made to increase the number of cadaveric donors with continuous campaigns to the public.
As a result there has been a significant increase among tissue donors from cardiac death. The
Ministry of Health of Malaysia through its network of National Transplant Resource Units has stepped
up efforts in educating the public to understand the importance of tissue organ donation and
become donors. Among the focus of our campaign is to educate the Muslim population that tissue
organ donation is permissible in Islam. At the same time the need to curb issue of organ trafficking
and dispel the myth of doctors stealing organs from dead bodies during post mortem examination.
However, The Human Tissue Act 1974 is the only statutory act in Malaysia that defines the law related
to the human body for the purpose of treatment, transplantation and its use for research and
education. This statutory act is rather outdated and too simple. It did not clearly defined on the
Persons legally in possession of a body other than for bodies investigated under the Criminal
Procedure Code.
This article will elaborate the various steps taken by the National Transplant Resource Units in
increasing the number of Tissue Organ donors among Malaysians. More developments are the
Drafting of the new Transplantation Act that will be tabled in the parliament soon and amending
the Human Tissue Act 1974 which is now under process. The amendment of the Human Tissue Act is
carried out to address the issues of using tissues, organs and the human body for the purpose of
medical education and research.
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SUB-THEMES 2: Ethical access to tissue collections and medical information, tissue
and data sharing for research, regulatory regimes for the protection of the
privacy of donors, and intellectual property rights derived from the body
PRESENTATION 1 SHOULD ANONYMIZATION EXTINGUISH OUR RIGHTS?
Dr Jeffrey Skopek, Lecturer in Medical Law, Ethics, and Policy; Deputy Director,
Centre for Law, Medicine, and Life Sciences, University of Cambridge
This talk will explore whether the anonymization of a person’s biomaterials and data should
extinguish that person’s right of control over their use in research, as is currently the law in many
jurisdictions. To answer this question requires an analysis of the scope of the values embodied in
the principles that govern human subjects research and how they apply to research outside the
body. Efficiency- and fairness-based rationales for extinguishing our rights of control post-
anonymization will be identified and developed, and potential counter-arguments will be explored.
Finally, the ethical and practical limits of anonymization will be discussed.
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PRESENTATION 2 OWNERSHIP OF ONESELF – OUR IDENTITY
Professor King-Lau Chow, Professor of Life Science and Biomedical Engineering, The
Hong Kong University of Science and Technology
Does our biology define our identity? Does our physical being define our uniqueness? Who owns
our body, or to better put it, our mind? Throughout human history, the contrast of those who have
and those who don’t have is always the seed leading to the class struggle, social unrest and of
course legal litigations. Most of the arguments on ownership are lingering around the physical
entities, e.g., a property, or items that can be translated into a measure of wealth/resources. Would
we be able to resolve all these conflicts? If there is a good way to solve it physically, one would
assume that these conflicts would have been eliminated long time ago. The answer may lie
beyond any physical solution. By defining and understanding what an individual’s own identity and
self, physical entities, and their tie to resources may fade away. The ownership of one’s body part,
DNA, or information stored therein may then be an easier question to answer.
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PRESENTATION 3 BODY RIGHTS – SCIENTI OR VOLENTI? PATIENT’S PERSPECTIVE
Mr Alex Chi-Yau Lam, Solicitor; Chairman, Hong Kong Patients’ Voices
In medical service, patients are commonly the subjects of receiving or giving away human organs,
blood, tissues, and other useful parts of human body in saving lives or extending their well-being.
While enjoying the benefits of advanced medical treatments such as organ transplant, blood
transfusion, treatments resulting from genetic study, etc, it may be time for us to stop and rethink if
there is a missing piece in the process of our decision when giving away anything from our body.
All such “parts” taken from a human body not only represents tangible property belonging to the
person from whom it is taken, but also intangible property such as genetic code, the DNA, blood
type, family connection, pathological data, sexually transmitted diseases (if any), other diseases,
and other sensitive and private information.
Applying the principle of private ownership under the common law, owners of body parts may
exercise all kinds of rights over their “properties” but when they pass over the “title” to another party,
does it mean they also transfer the ownership in those intangible properties too? Should they be
properly advised before any such decision affecting their privacy can be made? And how far can
a patient’s consent extend?
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Philip Beh
Co-Director, CMEL,
Associate Professor, Department of Pathology, Li Ka Shing
Faculty of Medicine, The University of Hong Kong
Philip’s research interests focus on clinical forensic medicine and forensic pathology.
His current research is on the development and maintenance of the Hong Kong
Homicide Monitoring Database. Data collected from the research is proving to
facilitate further researches on a variety of homicides.
Professor See-Ching Chan
Honorary Consultant in General Surgery, The Hong Kong
Sanatorium and Hospital; Honorary Clinical Professor, The
University of Hong Kong
Professor Chan graduated from The University of Hong Kong with a degree of BDS in
1985 and then of MBBS in 1995. He joined the Department of Surgery in 1996. After
promotion to Consultant in 2007, he was appointed Clinical Professor of the University
in 2011. He was endowed the Li Shu Fan Professor of Surgery in 2013. Since 2016, he
became Honorary Consultant Surgeon of the Liver Surgery Center of the Hong Kong
Sanatorium & Hospital and Honorary Clinical Professor of the Department of Surgery,
HKU.
He completed 3 doctoral degrees viz. the Master of Surgery in 2005 and the Doctor
of Philosophy in 2011, and Doctor of Medicine in 2013 published over 200 articles and
10 book chapters. In 2005 he received the State Scientific and Technological
Progress (SSTA) First-class Award from the National Office for Science and
Technology Awards. He serves on the editorial board of journals including
Transplantation, HBPD Int. and World J. of Transplantation and Liver Cancer.
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Clement Chen
Postdoctoral Fellow in the Faculty of Law, The University of
Hong Kong
Clement is Postdoctoral Fellow in the Faculty of Law, The University of Hong Kong. His
current research focuses on the right to privacy and freedom of information from both
normative and empirical perspectives. He also works on Chinese public law and
comparative administrative law. He received his legal education from HKU (PhD),
University Paris 1 Panthéon-Sorbonne (D.U. 3ème cycle «Le Droit en Europe», funded by
the French Government Scholarship), and Sun Yat-sen University (LLM and LLB). He was
awarded the Intersentia Prize for the Best PhD Thesis in Law at HKU, and has
participated in drafting local regulations governing FOI, data protection or
informatization in China. He was WYNG Visiting Fellow at the Centre for Genomics and
Policy, McGill University, and is Research Fellow at the Centre for Public Law, Sun Yat-
sen University.
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Professor King-Lau Chow
Professor of Life Science and Biomedical Engineering, The
Hong Kong University of Science and Technology
King-Lau Chow, Professor of Life Science and Biomedical Engineering at HKUST,
earned his PhD in Cell Biology from Baylor College of Medicine. He was a Belfer
Fellow of Molecular Genetics Department at Albert Einstein College of Medicine. At
HKUST, he has served as Associate Dean of Students, Academic Director of the
Common Core Program, Directors of the Molecular Biomedical Sciences Program
and Bioengineering Program. He currently holds the position as the Director of
Interdisciplinary Programs Office which oversees the development of Environment
and Sustainability, Biomedical Engineering, Public Policy, Risk Management and
Business Intelligence, Technology Management and Innovation Programs. He also
heads the Center for Development of the Gifted and Talented overseeing different
interdisciplinary research and undergraduate programs and activities nurturing
gifted students. His own research focuses on molecular genetics, neural
development, synthetic and evolutionary biology. He actively engages in various
teaching development programs, spearheads liberal arts education and
interdisciplinary education at HKUST. He has taught subjects of his own expertise
areas, as well as subjects at the juncture between science, engineering, social
science and humanity. He delivers classes in traditional lectures, group work,
exploratory-project-based courses, MOOC and extensive flipped classes at
undergraduate and graduate level, earning him the School of Science Teaching
Award, the Michael G. Gale Medal of distinguished teaching at HKUST.
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SPEAKERS AND PANELISTS BIOGRAPHY
Professor Leonardo de Castro
Department of Philosophy, University of the Philippines
Leonardo D. de Castro is Professor of Philosophy at the University at the University of
the Philippines in Diliman. Currently Chair of the Philippine Health Research Ethics
Board, he has served as member of the National Ethics Committee, the National
Bioethics Advisory Committee and the National Transplant Ethics Committee. He has
been involved in the training of members of Transplant Ethics Committees in the
Philippines and in Singapore. He was a member of the UNESCO International
Bioethics Committee from 2000 to 2007 and represented the Philippines in the Inter-
Governmental Bioethics Committee from 2008 to 2010. He has also served as
bioethics consultant to the United Nations, WHO, the European Commission, and the
European Union. He has served as President of the Asian Bioethics Association, Senior
Research Fellow at the Centre for Biomedical Ethics in Singapore and Editor-in-Chief
of the Asian Bioethics Review.
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Dr Imogen Goold
Associate Professor in Law, Faculty of Law, Oxford University,
Oxford University
Imogen is Associate Professor in Law, University of Oxford and also a Fellow of St Anne’s
College. She studied Law and Modern History at the University of Tasmania, Australia,
receiving her PhD in Law in 2005. She also received a Masters degree in Bioethics from
the University of Monash in 2005. From 1999, she was a research member of the Centre
for Law and Genetics. In 2002, she took up as position as a Legal Officer at the
Australian Law Reform Commission, working on the inquiries into Genetic Information
Privacy and Gene Patenting. Her current research interests include human
enhancement technologies and the regulation of reproduction. Her other focus is the
question of whether human biomaterials should be treated as private property, on
which she is currently completing a monograph to be published by Bloomsbury. She is
visiting the Faculty of Law of the University of Hong Kong as the Des Voeux Chambers
Oxford-HKU Visiting Fellow in August and September during which period she is also
concurrently Visiting Research Fellow of the Centre for Medical Ethics & Law.
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Guang Xing
Associate Professor, Centre for Buddhist Studies, The University
of Hong Kong
Guang Xing received his Ph.D. from School of Oriental and African Studies, the
University of London. He is an Associate Professor and Chairman of the Master of
Buddhist Studies Programme, the Centre of Buddhist Studies, The University of Hong
Kong and Tung Lin Kok Yuen Canada Foundation Visiting Professor in Buddhism and
Contemporary Society at the University of British Columbia, Vancouver 2007, Visiting
Professor of Buddhist Studies at the Buddhist College of Singapore 2010-2014. His
publications include The Concept of the Buddha: Its Evolution from Early Buddhism
to the Trikaya Theory (Routledge 2005) and The Historical Buddha (Beijing: Religions
and Culture Publication, 2005). He is currently working on two monographs “Filial
Piety in Chinese Buddhism” and “Buddhism and Chinese Culture” and has published
many papers such as “A Buddhist-Confucian Controversy on Filial Piety” in Journal of
Chinese Philosophy, 2010, “Buddhist Impact on Chinese Culture” in Asian Philosophy,
2013 and “The Teaching and Practice of Filial Piety in Buddhism” in Journal of Law
and Religion 2016.
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Ms Alison Hall
Head of Humanities, PHG Foundation, Cambridge
Ms Alison Hall - As Head of Humanities at the PHG Foundation, an independent
health-policy think-tank in the UK, Alison is actively involved in policy analysis,
evaluation and implementation. Professionally qualified as a lawyer and a nurse,
with a master’s qualification in health care ethics, her work focuses on ethical,
legal and social issues (ELSI), particularly the governance of human tissue and
data, arising from genomics and other emerging health technologies in the
context of increased personalisation. Recent work includes advocacy around
improved data sharing to support clinical genetics and genomics in the UK and
evaluating the impact of EU Regulations on data protection and in vitro diagnostic
devices. She is Chair of the Ethics and Policy Committee of the British Society for
Genetic Medicine and a member of the UK Data Access Committee - METADAC,
a member of the Global Alliance for Genomics and Health regulatory and ethics
working group and a lay member of an NHS research ethics committee.
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Calvin Ho
Assistant Professor, Centre for Biomedical Ethics, National
University of Singapore
Dr Calvin WL Ho JSD MSc (Econs) LLM is Assistant Professor at the Centre for
Biomedical Ethics in the Yong Loo Lin School of Medicine, National University of
Singapore (NUS), Co-Head of the World Health Organization Collaborator Centre on
Bioethics in Singapore, and Co-Head of the Accountability Policy Task Team of the
Global Alliance for Genomics & Health. He is also an Ethics Board member of
Médecins Sans Frontières / Doctors Without Borders (MSF), as well as a member on the
advisory committees for transplantation and on genetic testing of the Ministry of
Health (Singapore). Calvin has published on global health law and ethics, research
ethics and policy, health policy and governance, and is the co-editor of Bioethics in
Singapore: An Ethical Microcosm (2010, World Scientific), Genetic Privacy (2013,
Imperial College Press), and the author of Juridification in Bioethics (Imperial College
Press, 2016).
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Dr Chih-hsing Ho
Assistant Professor/Assistant Research Fellow , Academia
Sinica, Taiwan
Dr. Chih-hsing Ho is Assistant Professor/Assistant Research Fellow at Academia Sinica,
Taiwan. Her research focuses on the nexus of law and medicine in general, with
particular attention to the governance of genomics and newly emerging
biotechnologies, such as big data and biobanks. She is currently a Co-Principal
Investigator for a health cloud project in Taiwan, and is responsible for designing an
adequate regulatory framework for the secondary use of personal data and health-
related data linkage. She holds a Ph.D. in law from the London School of Economics
(LSE) where she was an Olive Stone Scholar. She obtained her first law degree from
Taiwan, and later received her LLM from Columbia Law School and a JSM from
Stanford University. Before moving back to Taipei in 2014, she had been working at
the Centre for Medical Ethics and Law (CMEL) at the University of Hong Kong.
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SPEAKERS AND PANELISTS BIOGRAPHY
Professor Bartha Maria Knoppers
Director, Centre of Genomics and Policy, McGill University,
Canada Research Chair in Law and Medicine
Bartha Maria Knoppers, PhD (Comparative Medical Law), holds the Canada
Research Chair in Law and Medicine (Tier 1: 2001 - ). In 2007, she founded the
international Population Project in Genomics and Society (P3G) and CARTaGENE
Quebec’s population biobank (20,000 indiv.). Former holder of the Chair
d’excellence Pierre Fermat (France: 2006 - 2008), she was named Distinguished
Visiting Scientist (Netherlands Genomics Initiative) (2009 - 2012) and received the
ACFAS prize for multidisciplinarity (2011). She is Chair of the Ethics Working Party of the
International Stem Cell Forum (2005 - ); Co-Chair of the Sampling/ELSI Committee of
the 1000 Genomes Project (2007 - 2013); Member of the Scientific Steering
Committee of the International Cancer Genome Consortium (ICGC) (2009- ); Chair,
Regulatory and Ethics Working Group - Co-Founder and Member, Transitional
Steering Committee (TSC) of the Global Alliance for Genomics and Health. She holds
four Doctorates Honoris Causa, is Fellow of the American Association for the
Advancement of Science, of The Hastings Center (Bioethics) and of the Canadian
Academy of Health Sciences (CAHS) and Officer of the Order of Canada and of
Quebec. She also received an award “Prix Montreal In Vivo: Secteur des sciences de
la vie et des technologies de la santé” in 2012 and in 2013 was named “Champion of
Genetics” by the Canadian Gene Cure Foundation.
Mr Terry Kaan
Associate Professor in Law, Faculty of Law; Co-Director,
Centre for Medical Ethics & Law, The University of Hong Kong
Mr Terry Kaan is Associate Professor of Law, The University of Hong Kong; Co-
Director, Centre for Medical Ethics and Law. Terry Kaan’s research interests span
from tort law to medical ethics and law. He has published articles and book
chapters with regard to the issues of traditional, contemporary and alternative
medicine, and genetic privacy. His current research is on how genetic testing
impacts doctor-patient relationship.
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SPEAKERS AND PANELISTS BIOGRAPHY
Mr Alex Chi-Yau Lam
Solicitor; Chairman, Hong Kong Patients’ Voices
Alex Lam began his patient advocacy career quite accidentally during the SARS
outbreak in 2003 when he was (mis)diagnosed with the disease. On recovery, he
helped to incorporate the Hong Kong SARS Mutual Help Association in order to assist
those who survived the deadly disease. He is currently the Chairman of the
Association. Alex was elected a council member of the Hong Kong Alliance of
Patients’ Organizations in 2011 and advanced as Vice-Chairman in next year, until his
term finished in 2015. In 2014, he helped forming the Hong Kong Alliance of Rare
Diseases and had served as one of the founding members. Together with other well-
known local patient leaders, Alex formed the Hong Kong Patients’ Voices (HKPV) in
August 2015 in order to advocate the important concept of Patient-Centred
Healthcare. HKPV is one of the two most influential patient advocacy groups locally
with ample opportunities to express views over various policies and matters affecting
the interest of patients. Currently, Alex serves as a member of the Hospital Authority’s
Public Complaints Committee, and of the Committee on Strategic Review on
Healthcare Manpower Planning and Professional Development (Medical Sub-group)
of the Hong Kong Government’s Food and Health Bureau. In 2016, an amendment
bill to reform the Hong Kong Medical Council was unable to pass the 2nd reading in
the Legislative Council due to filibustering by the lawmaker representing the medical
sector. A tripartite platform was later formed by the government to facilitate
discussions between doctors, lawmakers, and patient representatives, hoping to
enhance communication and promote understanding among them, and paving the
way to another round of submission of a new bill for passing. Alex was nominated and
appointed as a member in the platform.
Alex is a practising lawyer and an accredited general and family mediator. His
practice covers civil and criminal litigation, and non-refoulement claims under the
United Nations Convention Against Torture and Hong Kong Bill of Rights.
Mr Colm McGrath
WYNG Research Fellow in Medical Law and Ethics, Trinity Hall,
University of Cambridge
Colm McGrath is a member of the Cambridge Centre for Law, Medicine and Life
Sciences based at the Faculty of Law, where he has taught Tort Law, Contract Law,
Comparative Law, European Legal History and Roman law. Between 2009 and 2014
he was a scientific assistant at the Institute for European Tort Law in Vienna and a
lecturer at the University of Graz where he taught private law and healthcare law.
His research focuses on the comparative analysis of private law and the nature of
professional liability, in particular the liability and regulation of the medical
profession. He is the Co-General Editor of the long-running Journal of Professional
Negligence and the Book Reviews Editor for the Journal of European Tort Law.
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SPEAKERS AND PANELISTS BIOGRAPHY
Professor Tohru Masui
Center for Genetics, Keio University School of Medicine
Dr. Tohru Masui had education and training as a developmental biologist in the
University of Tokyo. He started his career in the area of cancer researcher in the
Japanese Cancer Research Foundation (JCRF) in 1981. Then he spent his posdoc
in NCI, Bethesda for 5 years and returned to JCRF. After he moved to the Cellbank
in the National Institute of Health Sciences in 1995, he has been involved in policy
and ethics studies on the use of human materials and information in medical
research. Then 1999 he started to follow the planning process of UK Biobank and
related activities in UK. He moved to the National Institute of Biomedical
Innovation (NIBIO) in 2005 and from 2009 he has been chairing the Department of
Bioresources Research (Japanese Collection of Research Biologicals). He also has
been working in several areas of governmental committees of biorsources policy
and evaluation. Then in 2010, the institute accepted the establishment of the
Office of Policy and Ethics Research. He also worked in the establishment of
Biobank in the National Institute of Global Health and Medicine. He retired from
the NIBIO in 2014 and moved to Keio University School of Medicine, the Center for
Medical Genetics, as professor. His interest stays in the area of policy and ethics of
the use of human materials and information in medical research.
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Professor Peter Skegg
Emeritus Professor, Faculty of Law, University of Otago
Peter Skegg is an Emeritus Professor at the University of Otago in New Zealand. He
retired in 2014 after a little over three decades as a Professor of Law at the University
of Otago, before which he spent nearly a decade and a half at the University of
Oxford (initially as a Commonwealth Scholar from New Zealand but after the first two
years as a Fellow of New College). He has a long-standing interest in medical law
and his book Law, Ethics, and Medicine: Studies in Medical Law (Oxford University
Press, Oxford and New York, 1984) was one of the first on the subject. He has served
as Chairman of the Oxford Law Faculty and as Dean of the Otago Law Faculty. In
2012 he was made a Companion of the New Zealand Order of Merit.
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Jeffrey Skopek
Lecturer in Medical Law, Ethics, and Policy, Faculty of Law,
University of Cambridge; Deputy Director, Centre for Law,
Medicine and Life Sciences
Jeffrey Skopek’s research interests centre on advances in the biosciences that
destabilize categories and concepts that play a foundational role in our law and
ethics. He is currently working on projects that explore challenges posed by
developments in personalized medicine, biobanking, and big data. He previously
taught at Harvard Law School, where he was a research fellow at the Petrie-Flom
Centre for Health Law Policy, Biotechnology, and Bioethics. Prior to entering
academia, he served as a law clerk to the Chief Judge of the United States Court of
Appeals for the First Circuit. He has been awarded Fulbright, Gates, and Truman
Scholarships and holds a J.D. (magna cum laude) from Harvard Law School, a Ph.D.
and M.Phil. in the History and Philosophy of Science from the University of
Cambridge, and an A.B. in History (with distinction) from Stanford University.
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Dato’ Dr Zahari Noor
Head and Consultant, Department of Forensic Medicine,
Penang Hospital, Malaysia
Dr Zahari Noor is currently the Head of Department and Senior Consultant in Forensic
Medicine Department of Forensic, Medicine Hospital Pulau Pinang, Penang,
Malaysia and Deputy Head of Forensic Medicine Services, Mninistry of Health of
Malaysia. He is also Head of Transplant Resource Unit and Chairman of the Tissue
Organ Procurement Committee Hospital Pulau Pinang. He is a double specialist in
Forensic Pathology and Clinical Forensic Medicine and has been consulted on
Health Care and issues related to Detainees, Victims of Violence and Sexual Assault
and Death in Custody. He is also a member of the Drafting Committee on the
Transplant Bill and at the Human Tissue Act Amendments Committee for the Ministry
of Health of Malaysia.
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SPEAKERS AND PANELISTS BIOGRAPHY
Dr Ron Zimmern
Chairman, PHG Foundation, Cambridge; Honorary Professor
of Public Health, The University of Hong Kong
Dr Ronald Leslie Zimmern is Chairman of the Foundation for Genomics and
Population Health (the PHG Foundation), the successor to the Public Health
Genetics Unit which he established in 1997 and which he directed until 2010. He
graduated in 1971 following his medical training at Trinity College, Cambridge and
the Middlesex Hospital, London. After specialising in neurology, he obtained a law
degree and entered public health medicine in 1983. He was Director of Public
Health for the Cambridge and Huntingdon Health Authority from 1991-1998. Dr
Zimmern is known internationally as a founder of the field of public health
genomics. He has an Honorary Professorship in Public Health at HKU and is a Fellow
of Hughes Hall in Cambridge. He has written widely on medical ethics and
law issues, such as on the ethical issues on revealing the results of whole-
genome sequencing and predictive genetic testing.
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This conference is organized by:
In Collaboration with: